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Maple Syrup Urine Disease (MSUD) is an inherited metabolic disorder, that, if untreated, causes mental retardation, physical disabilities and death. First described as a disease in 1954, it is a rare disorder, believed to be in all ethnic groups worldwide. The national incidence is 1 in 225,000 births. MSUD derives its name from the sweet, burnt sugar, or maple syrup smell of the urine. The disorder affects the way the body metabolizes (processes) certain components of protein. These components are the three branched-chain amino acids leucine, isoleucine, and valine. These amino acids accumulate in the blood causing a toxic effect that interferes with brain functions.
MSUD Family Support Group
It is necessary for caretakers to thoroughly understand the diet and treatment for MSUD. Parent interest in support and information prompted the first MSUD Symposium for families and professionals in 1982. It was here that the families discussed the need for a support group.
In 1983 the first MSUD Newsletter was printed and distributed throughout the United States and Canada. It has continued to provide the latest information on the treatment of the disorder, reports on the latest research, up-to-date diet information, family news and related topics.
The MSUD Family Support Group is a nonprofit organization which includes families and professionals worldwide. This growing organization continues to develop resources to meet the goals of support and education. Informed families and professionals can provide better care for the child with MSUD. Treatment has improved and the future continues to brighten for these children and their families.
The MSUD Family Support Group is dedicated to: - Providing opportunities for support and personal contact for those with MSUD and their families.
- Distributing information and raising public awareness of MSUD.
- Strengthening the liaison between families and professionals.
- Encouraging newborn screening programs and research for MSUD.
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